Getting back to life after stroke: co-designing a peer-led coaching intervention to enable stroke survivors to rebuild a meaningful life after stroke

Purpose: Rebuilding one’s life after stroke is a key priority persistently identified by patients yet professionally led interventions have little impact. This co-design study constructs and tests a novel peer-led
coaching intervention to improve post-stroke leisure and general social participation.
Methods: This study followed the principles of co-design by actively engaging and harnessing the knowledge of stroke survivors in order to develop and test a peer-lead coaching intervention. Phase 1 assessed
function, mood, and involvement in leisure and social activities 6 months following stroke (n ¼ 79). Phase
2 involved semi-structured, in-depth interviews with 18 stroke survivors, and 10 family carers to explore
experiences related to social and leisure participation. Phase 3 tested the co-designed peer-led coaching
intervention. Data collected also included co-design feedback sessions and a training workshop with
selected peer coaches and in addition, interviews with stroke survivors and their peer coaches at two
time-points: following the training program (n ¼ 5) and delivery of the intervention (n ¼ 2).
Results: A peer-coaching intervention was successfully co-designed and tested combining the use of lay
knowledge sociocognitive and self-regulatory theories with principles of transformational leadership theory. Both peers and stroke survivors reported having benefited at a personal level.
Conclusions: This study reports on an innovative community-based and peer-led intervention and its
results have generated new evidence on how stroke survivors engage with and respond to peer coaching
support. It further provides a theoretical platform for designing and implementing peer interventions.
Hence, these results have the potential to inform the development of future peer coaching intervention
not only for stroke rehabilitation but also for a wide range of chronic conditions.

IMPLICATIONS FOR REHABILITATION
The results of this co-design study, if replicated and extended, provide a theoretical framework to
guide rehabilitation professionals about the optimal timing of peer-coaching interventions and contextual factors that need to be taken into account.
Applying transformational leadership theory principles to the training of peers may prove useful at
the time of the implementation of a coaching intervention.
Peer-led coaching interventions, which are community-based and tailored to stroke survivors at the
time of discharge, may help support re-engagement in social and leisure activities.

[1] National Audit Office (UK). Progress in improving stroke
care. 2010. Her Majesty’s Stationery Office P002346666 02/
10 77240.
1370 P. MASTERSON-ALGAR ET AL.
[2] World Health Organization (WHO). WHO STEPS Stroke
Manual: The WHO STEPwise Approach to Stroke
Surveillance. Geneva: World Health Organization; 2006.
[3] Daniel K, Charles DA, Wolfe MD. What are the social consequences of stroke for working-aged adults? A systematic
review. Stroke. 2009;40:e431–e440.
[4] Lo Buono V, Corallo F, Bramanti P, et al. Coping strategies
and health-related quality of life after stroke. J Health
Psychol. 2017;22:16–28.
[5] Pollock A, St George B, Fenton M, et al. Top ten research
priorities relating to life after stroke. Lancet Neurol. 2012;
11:209.
[6] Morris R, Morris P. Participants’ experiences of hospitalbased peer coaching groups for stroke patients and carers.
Disabil Rehabil. 2012;34:347–354.
[7] Sveen U, Thommessen B, Bautz-Holter E, et al. Well-being
and instrumental activities of daily living after stroke. Clin
Rehabil. 2004;18:267–274.
[8] Hartman-Maeir A, Soroker N, Ring H, et al. Activities, participation and satisfaction one-year post stroke. Disabil
Rehabil. 2007;29:559–566.
[9] Carlsson GE, Moller A, Blomstrand C. Managing an everyday life of uncertainty-a qualitative study of coping in persons with mild stroke. Disabil Rehabil. 2009;31:773–782.
[10] Jones S, Auton M, Burton C, et al. Engaging service users in
the development of stroke services: an action research
study. J Clin Nurs. 2008;17:1270–1279.
[11] Parker CJ, Gladman JRF, Drummond AER, et al. A multicentre randomized controlled trial of leisure therapy and
conventional occupational therapy after stroke. Clin
Rehabil. 2001;15:42–52.
[12] Logan PA, Gladman JRF, Drummond AER, et al. A study of
interventions and related outcomes in a randomized controlled trial of occupational therapy and leisure therapy for
community stroke patients. Clin Rehabil. 2003;17:249–255.
[13] Desrosiers J, Noreau L, Rochette A, et al. Effect of a home
leisure education program after stroke: a randomized controlled trial. Arch Phys Med Rehabil. 2007;88:1095–2000.
[14] Hartman-Maeir A, Eliad Y, Kizoni R, et al. Evaluation of a
long-term community based rehabilitation program for
adult stroke survivors. Neurorehabil. 2007;22:295–301.
[15] Reupert A, Maybery D. A snapshot of Australian programs
to support children and adolescents whose parents have a
mental illness. Psychiatr Rehabil J. 2009;33:125–132.
[16] Foster K, Lewis P, McCloughen A. Experiences of peer support for children and adolescents whose parents and siblings have mental health illness. J Child Adolesc Psychiatr
Nurs. 2014;27:61–67.
[17] Kessler D, Egan M, Kubina LA. Peer support for stroke survivors: a case study. BMC Health Serv Res. 2014;14:256–265.
[18] Beauchamp MR, Scarlett LJ, Ruissen GR, et al. Peer mentoring of adults with spinal cord injury: a transformational
leadership perspective. Disabil Rehabil. 2016;38:1884–1892.
[19] Greenwood N, Habibi R, Mackenzie A, et al. Peer support
for carers: a qualitative investigation of the experiences of
carers and peer volunteers. Am J Alzheimers Dis Other
Demen. 2013;28:617–626.
[20] Ng L, Amatya B, Khan F. Outcomes of a peer support program in multiple sclerosis in an Australian community
cohort: a prospective study. J Neurodegener Dis. 2013;
2013:429171.
[21] Nesta (UK). Peer Support: What is it and does it work?
National voices. People shaping health and social care.
2015.
[22] Dennis CL. Peer support within a health care context: a
concept analysis. Int J Nurs Stud. 2003;40:321–332.
[23] Ch’ng AM, French D, McLean N. Coping with the challenges of recovery from stroke: long term perspectives of
stroke support group members. J Health Psychol. 2008;13:
1136–1146.
[24] Hancock E. Health Recovery Social Networks: Exploring the
experiences of participants in stroke recovery peer support
groups. Ottawa, Canada: Stroke Recovery CanadaVR
; 2009.
http://www.marchofdimes.ca/EN/programs/src/Documents/
Strokepeersupport.pdf]
[25] Batalden M, Batalden P, Margolis P, et al. Coproduction of
healthcare service. BMJ Qual Saf. 2016;25:509–517.
[26] Beaver LG, Litowsky L, Suddes M, et al. I.N.S.P.I.R.E.S. - inpatient support program in recovery from stroke- “the voice(s) of experience”. Stroke. 2012;43:e115–e162.
[27] Ajzen I. The theory of planned behavior. Organ Behav Hum
Decis Process. 1991;50:179–211.
[28] Bandura A. Self-efficacy. New York: Freeman; 1997.
[29] Leventhal H, Diefenbach MA, Leventhal EA. Illness cognition: Using common sense to understand treatment adherence and affect cognition interactions. Cogn Ther Res.
1992;16:143–163.
[30] Bass MB. Leadership and performance beyond expectations. 4th ed. New York: Free Press; 1985.
[31] Kelly GA. The psychology of personal constructs. 2nd ed.
New York: Norton; 1955.
[32] Johnston M, Pollard B, Morrison V, et al. Functional limitations and survival following stroke:psychological and clinincal predictors of 3-year outcome. Int J Behav Med. 2004;11:
187–196.
[33] Morrison V, Pollard B, Johnston M, et al. Depression and
anxiety following stroke: Demographic, clinical, psychological predictors of 3-year outcome. J Psychosom Res.
2005;59:209–213.
[34] Clarke D, Jones F, Harris R, et al. What outcomes are associated with developing and implementing co-produced
interventions in acute care settings? A rapid evidence synthesis. BMJ Open. 2017;7:e014650.
[35] Van Swieten J, Koudstaal P, Visser M, et al. Interobserver
agreement for the assessment of handicap in stroke
patients. Stroke. 1988;19:604–607.
[36] Quinn T, Langhorne P, Stott D. Barthel index for stroke trials: development, properties, and application. Stroke 2011;
42:1146–1151.
[37] Goldberg D, Williams P. A User’s Guide to the General
health Questionnaire. Windsor: NFER-Nelson; 1988.
[38] Charmaz K. Grounded theory: Objectivist and constructivist
methods. In: Denzin N.K. & Lincoln T.S. eds. Handbook of
Qualitative Research. 2nd ed. Thousand Oaks, CA: Sage
Publications; 2002.
[39] Kouwenhoven SE, Kirkevold M, Engedal K, et al. Depression
in acute stroke: prevalence, dominant symptoms and associated factors. A systematic literature review. Disabil
Rehabil. 2011;33:539–556.
PEER-LED COACHING INTERVENTION FOR STROKE SURVIVORS 1371
[40] Simoni A, Shanks A, Balasooriya-Smeekens C. Stroke survivors and their families receive information and support on
an individual basis from an online forum: descriptive analysis of a population of 2348 patients and qualitative study
of a sample of participants. BMJ Open. 2016;6:e010501.
[41] Cameron JI, Gignac MA. “Timing It Right”: a conceptual
framework for addressing the support needs of family
caregivers to stroke survivors from the hospital to the
home. Patient Educ Couns. 2008;70:305–314.
[42] Goldfinger JZ, Kronish IM, Fei K, et al. Peer education for
secondary stroke prevention in inner-city minorities: design
and methods of the prevent recurrence of all inner-city
Strokes through Education randomized controlled trial.
Contemp Clin Trials. 2012;33:1065–1073